Forum

CIS and DMD

Hi everyone,

So after a while of waiting I have had confirmation of CIS and told to watch and wait.

My question is however after reading up it seems I should possibly be looking into DMDs I unfortunately did not get the chance to ask about them in my last appointment as my neurologist never mentioned CIS so until I had the report I had no clue.

I will of course make an appointment to talk through with my GP but do we prescribe DMD for CIS in England? I have leisions on both my spine and brain does this make a difference? I am also still having symptoms from my main issue 4yrs ago. I can barely see in my left eye.

I would just like to be a little prepared if this is something the NHS potentially offer and would it be worth looking into? I understand they have some strong side effects so I guess should they be offered I would have to weigh up the positives.

I hope a few of you may have some insight to CIS

Thank you all.

I had cis, not offered any Dmd. Now definite ms and still not offered dmd. Sorry but that’s my experience. I’m chasing it thou. No harm looking at the DMDs about both MS Society and ms trust have good info.

Hi Chatterbox Thabk you for taking the time to reply. I really don’t think I want to be taking anything at this stage however if it saves my sight I would possibly be swayed. Could I ask the time between your CIs and MS diagnosis? Also did you get any relapses before your MS diagnosis? I had at least 2 seperate ON diagnosed by hospital ophthalmologist but neurologist Says these don’t count towards diagnosis as it’s the same eye. Have you herd this before? Thank you again

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I suffered optic neuritis June 16. CIS diagnosis Oct 16, repeat mri with contrast (first mri through ophthalmology no contrast aug 16 showed a number of white matter lesions, but apparently non specific in distribution and some ovoid in shape) and lumber puncture feb 17. Positive bands and new enhancing lesion found. At neuro appt mar 17 told probably ms, but that they hadn’t tested csf (neuro was fuming) but used frozen sample, so found out positive bands via letter in jun 17. Multiple discipline meeting confirmed new enhancing lesion after review, letter received July 17. Next neuro appointment sep 17, confirmed ms. Just literally had results of mri contrast from December via letter, no new lesions, good news. However, I’ve new symptoms developed jan ( so after last mri ) which may or may not be ms related. Wait from seeing neuro when diagnosed sept 17 to next appointment, which is June 18.

I think everyone is different and I don’t think you can compare. I’ve read 50% of people (on average) who suffer an episode of optic neuritis convert to ms, but the timeframe can be anywhere from less than a year ( which in affect I was) to 15 years. In terms of the two separate things, this relates to the separation in space. So, my understanding is multiple sclerosis is a separation in time and two separate parts of your nervous system.

Only a neuro can diagnose you. It might not be ms, as other illnesses can cause lesions and optic neuritis. Have you had loads of blood tests yet? You say your sight hasn’t recovered, did it the first time? I must admit mine pretty much recovered after a number of weeks , with the residual colour contrast taking about a year to come back. I have a slight haziness - but can read down the chart the same as the other uneffected eye, which sounds weird I know, eye optician explained that’s the damaged nerve causing faulty signal transmission.

I remember the feeling of limbo, well actually to be honest I still feel in limbo. I’m not sure the type of person you are, but having some questions to ask the neuro ready beforehand is I think a good thing. You say you are going back to your gp, but aren’t you been reviewed by a neuro again?

Its a fine line between reading up and getting worked up and worrying thou, I definitely crossed it. It’s tough and definitely an unpleasant experience. I just got on with my live and did the same things best I could. I wish you luck.

I had ON in 2014 which I had a full recovery from I had a MRI which was I small non specific spot on brain

then in 2016 I had ON plus full left side numbness and weakness (and a few other symptoms) had another head and spine MRI which is when then other lesions were found only 1 on my spine but a few in my brain. I was supposed to have an MRI with contrast but they didn’t have a consult so left it without.

Saw my neurologist in 2017 who said watch and wait claim back in a year. I was happy with this.

Saw him again this year after 2 more ON (seperate events) some severe pain in my finger tips and toes (very odd I know) and a few other niggling symptoms. I was told that I may have to learn to deal with partial sight loss (it’s like I’m looking through a net curtain) and to watch and wait. I was happy with this except for the sight loss part. I wanted some help/reassurance I could get my eyes checked.

Then came the letter with “I have come to a diagnosis of CIS” so while happy to watch and wait i don’t want to lose my sight if I can help it.

I should add that in 2016 my neurologist write to my GP that I fulfilled the McDonalds criteria for MS but he would like to watch and wait

i certainly do not want to have MS I would just like to protect what I can especially my sight and if I can slow down the progression then that would be a bonus.

As a person I am not a worrier or a Googler I just look at a couple of sites my GP said were good.

Thank you again for reading

Hi Sammy lea

Have a look at https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis It helps to explain the diagnosis of CIS and includes the subject of treatment with disease modifying drugs (DMDs).

Then you could have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid You can isolate the DMDs which are licensed for CIS with the Decision Aid tool.

I would expect that you would be assigned to an MS nurse, assuming this to be the case, you can discuss with him/her DMDs. If you’ve not been assigned an MS nurse try phoning the neurologist’s secretary to ask if you will be, or for the contact details. Actually I’d suggest phoning anyway, to ask whether you’ll be given a new appointment with the neurologist, now you’ve been diagnosed with CIS.

I actually don’t understand how you could fit the criteria in 2016 for MS (but adopting a ‘watch and wait’ strategy, which doesn’t necessarily seem to have helped you!) and only a CIS diagnosis in 2018. Surely you can’t fit the criteria for MS then 2 years later not, despite more relapses. If the neurologist in 2016 was invoking the McDonald Criteria, then I can’t see that they can then invoke the same criteria and diagnose CIS. See: ​https://www.mstrust.org.uk/a-z/mcdonald-criteria

Your eyesight is rather important, so you don’t want to be messing around with ‘watch and wait’ when you’ve had ON a few times already. And to be told you might have to live with partial sight loss sounds a bit serious to me. I wouldn’t be very happy to wait for more damage to occur before being given drugs to prevent relapses, which could cause further damage.

I feel that you are feel extremely reasonable about this and perhaps it’s coming to the time when you start to demand a bit more action, and a little less watching and waiting.

Sue

HI sue,

Wow thank you that is all so helpful I didn’t realised I should have a MS nurse but that would be a huge help.

As for the criteria I also cannot understand it but just thought it takes time to get to the bottom of these complex problems and took his word for it. I couldn’t get an answer as to why I should just accept my loss of sight he said sometimes we just have to get used to things.

Does area/postcode make a difference to MS nurses and diagnosis?

Also do you think it is a reasonable request to ask for a repeat scan? As with possible further relapses there maybe more evidence there? Or is this something patients don’t do?

I will certainly look through the links and call the receptionist tomorrow. This forum is a true life saver sorry for all the questions

Thank you again.

Ok:

a) no one should have to just ‘get used’ to loss of sight, unless everything has been tried to prevent any further loss.

b) yes, you may well have an MS nurse. Like,

c) everything changes from area to area. But you should still have access to an MS nurse.

d) I’m not sure you’d be successful in asking for a repeat MRI. If you’ve just had one. There wouldn’t be much point.

I hope you get sorted with some reasonable explanations and perhaps access to an MS nurse and DMDs.

Whatever happens, let us know on here.

Sue

Mhmm, sounds to me that you have to put your foot down. If I have understood correctly your last scan was 2016, if this is the case I personally don’t think it is unreasonable to request another. To be honest I am in the process of writing a letter to my neuro as I don’t understand why I haven’t been offered DMD. As you, I’ve experienced ON, it’s not just that you need to be nearer to see things, as you say when you look at text some of the letters are missing and it’s all blotchy, you lose your depth perception as you have lost colour contrast, your field of vision is knackered and to top it off you lose confidence when driving ( checked I was allowed) as you feel very vulnerable, oh and it hurts. So I really do understand that you don’t want to lose more vision. Neither do I or any other sane person. I just can’t believe that a neuro has just left you like this. I agree with everything Sue has said. Quite frankly, as your posts have expanded in detail I can’t believe you are happy to watch and wait. Everyone is different and I don’t know all your circumstances, but just going on what you have described I would be onto your GP to see if he can add wait to your cause and asking for explanations- I mean at what deterioration point is the neuro happy to offer DMD!! I am in shock on your behalf. I also don’t see how you backwards in disease diagnosis?

HI again,

sue I will certainly keep you updated. Thank you so much for all you information.

Chatterbox. I think I was happy to watch and wait as I don’t feel I had any other option. There are no other MS Neurologists around unless I go private which unfortunately isn’t an option.

However seeing this I think I now understand that I can do more to chase and push not necessarily for a diagnosis but information and help!

You are so right about the ON pain though Chatterbox it really does get frazzled sometimes. I also seem to be having some real pain in my fingertips at the moment. So thinking this maybe another symptom. I will certainly contact his secretary and my GP for help.

I really am so grateful for the forum! X

*** update***

so I unfortunately cannot get through to my neurologists secretary. I have left a message but they have never returned a call yet so not high hopes.

My GP is going to look into some help as he does not know anything about CiS. He believes the neurologist would have to refer me to the MS nurse so is unsure what he can do but he will raise the question.

So does anyone know if you automatically qualify for an MS nurse with CiS or is a postcode thing? Or dependant on your signs and symptoms?

i hope if I can gather some more information I may be able to get some help?

Thank you everyone

All I know is in my area the neuro puts you on the ms nurses patient list upon diagnosis.

I just did a google search on MS nurse and my nearest town. The search brought up all the MS Specialist Nurse Services in the area.

Each local area office has the names of the MS nurses, their address, phone number and an email address.

This obviously will differ from area to area, but it’s worth a try. If successful, you could phone the MS nurse nearest to you and ask for their advice.

Otherwise, try the same tactic for the town plus neurological services. My area has a Community Neurological Rehab Team, a similar service might either be able to put you in touch with an MS nurse or suggest a way that you can.

Failing that, try the MS Society local to you (look at the ‘Near Me’ button on this site for yours).

I hope you can find the contact details. It’s just a bit crap that you are told ‘oh it’s CIS’ and left to get on with it.

Sue

Hi Sue, I’m afraid it is the sad reality for a lot of us. I was cis diagnosis Oct 16 after my ON and abnormal mri, didn’t speak to a ms nurse until dec 17. I was diagnosed sept 17 with definite ms. When I phoned the ms nurse about 5-6 weeks after definite diagnosis, so November 17 (I was given a phone number to call if I had new symptoms after probably ms in March 17) she told me she didn’t know who I was and I wasn’t on the system. Basically the neuro had been off for two months (reason unknown) and hadn’t passed my details on. From reading other people’s post on here I do not think this is an uncommon situation. That’s why this forum and people like yourself who have, unfortunately/ fortunately? lived with ms for some time are invaluable. Why the resource literature on both charities websites is treasured. I try and post if I feel I can answer a question or contribute as I remember only too well the emotional turmoil. I agree thou (again) with you it sucks.